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Posted 12/25/2018 11:02 PM (GMT 0)
Just curious how other men are handling regret over treatment. After 15 years of active surveillance, I was a 3+4 Gleason score with several non-aggressive tumor‘s but one near or on the prostate edge and likely to get outside the capsule. My robotic surgery within excellent surgeon has left me, after three years, with no identifiable cancer, but I have a very slight incontinence and no erectile function. I’ve been read the examples of men with my health conditions who would have succumbed to cancer, I continue to be even more unhappy with my choice. My minimal incontinence is mostly a nuisance, but my inability to have erectile function bothers me much. I have had some success with tri-mix but don’t like the pain. I had been in a long term support group in the statistics were mentioned, and I wish I had consulted urologist who treated me for so long one more time. I appreciate this site, and wish I had found it in all of the readings, the many readings, that I had done.
Posted 12/25/2018 11:18 PM (GMT 0)
No regrets here. I too had GS 7 (3+4). I had robotic surgery 5 years ago with a small positive margin which resulted in two years later under going 39 treatments of IMRT/IGRT. My PSA is still undetectable using ultrasensitive tests. I was lucky in that both nerve bundles were saved. I never suffered ED nor incontinence except for very minimal stress incontinence.

BTW, how long has it been since surgery?

BTW, other options might prove to be a worse outcome. You will never know. The old adage "grass is always green on the other side of the fence" isn't always true.
Posted 12/26/2018 12:45 AM (GMT 0)
No regrets here either. I was Lucky 7 too (4+3). It has been almost six years and so far, so good. Happy holidays!
Posted 12/26/2018 12:47 AM (GMT 0)
Looking back I'm about neutral on what I would've chosen if I had a re-run. I sometimes wish I'd chosen another option. Seems a nightmare the past 12 months with some issues I've had. Emotionally it wrecks you too. But like lapilot says, chances are I would've had a different set of issues if I had chosen a different path. And who knows, they may have been worse.
Posted 12/26/2018 1:03 AM (GMT 0)
Hi, Robert--

If you search "regret" in the Custom Search for this forum, you'll see we've had many threads devoted to that topic. You might want to read them.

There are no guarantees in cancer treatment. If you did your homework and made an informed risk/reward choice of treatment, you may have cause for disappointment at the result, but not for regret. It sounds like you did the best you could under the circumstances, so cut yourself some slack.

have you looked into getting a penile implant? Many men in this forum have gone that route, and most have been satisfied with the result.

Best wishes in the new year!

--SP.
Posted 12/26/2018 3:52 AM (GMT 0)
Yeah, I know , coulda, woulda, shoulda...
10 years of Trimix is a bit old for me. I couldn’t tolerate active surveillance, I’m too neurotic for that. So it was surgery or some form of radiation. I had a swollen prostate making me piss every 2 hours night and day, I was told radiation wouldn’t help that but might make it worse! So went with surgery to get rid of that problem and here I am, oh well, that’s life I suppose...
Posted 12/26/2018 3:55 AM (GMT 0)
Welcome to HW.

I have no regrets over my choice. I did have second thoughts early on, but that's in the past.

Yes, there are losses due to treatment, but it's not worse than what no treatment could have done.

Andrew
Posted 12/26/2018 5:36 AM (GMT 0)

jasperx10 said...
Looking back I'm about neutral on what I would've chosen if I had a re-run. I sometimes wish I'd chosen another option. Seems a nightmare the past 12 months with some issues I've had. Emotionally it wrecks you too. But like lapilot says, chances are I would've had a different set of issues if I had chosen a different path. And who knows, they may have been worse.

Me. Neutral.

It’s changed my life. My chances of PCa killing me or not killing have not increased, nor decreased, as a result of my treatment for it. However...

I could not do nothing. So...

I call it “a wash”.
Posted 12/26/2018 5:46 AM (GMT 0)
I had serious regrets. Rushed into RP (GL 7) before I found this forum and never looked into other treatments. Erections are important to me. Regret does not help anything at this point. As it turned out the PC was spreading and all my nerves were removed. Rp with clear margins probably was the best choice after all. I was allergic to trimix, so went on to implant. Very satisfied with it. Hoping PSA stays low.
Posted 12/26/2018 11:03 AM (GMT 0)
Noi regrets more I find my self pondering what-ifs, of course, I quickly shake that off as it is useless to ponder the impossible. I suspect the regrets are really being worried about whether we got this thing under control.
Posted 12/26/2018 12:21 PM (GMT 0)
Exactly 6 years ago today I was doing the all - day prep for surgery Dec 27. Got the trifecta for my little 'moderately dangerous' G7(3+4). I am allergic to the surgical adhesive they used so I woke from surgery with quarter-sized blisters all over my belly, and that was just the start of the pain and damage.

Then that (3+4) turned out to be G(4+3) but.....just because they didn't see any G5's doesn't mean there weren't any there to find. sad

Now, after all of those treatments, I am on my way back to 1st round chemo real soon. Regrets? Only 1, and that would be not dumping the less-than-qualified urologist that missed it twice before I dumped his sorry ***** and went to a real doctor who found it - 12 out of 12 cores....2 years later.

Yep, sex was fun and I hope to experience that again someday, maybe. However, my life is vastly much more than just sex as is my relationship with my wonderful (menopausal and no longer very interested) wife.

No real regrets on treatments, though.

As for advice - we are advised to "be here, now" The past is dead and gone, there are no redo's on things that have already happened, so it is illogical to obsess on decisions already made. "much of our pain comes from our choice of attachments."

There is no sense in putting yourself through the shredder for water under the bridge you can do nothing about.
Posted 12/26/2018 1:19 PM (GMT 0)
I have no regrets on my dicision to have surgery, and I am glad I didi it when I did..

I also have a slight incontenence where I leak if I don't go to the bathroom every hour. Also I leak if i lift something or move the wrong way, but I have learned to live with it , and this is a small price to pay for being canecr free.

As to my ED status, I have had none. I was getting rock solid erections the day the catheter was removed and still am today .
Posted 12/26/2018 2:40 PM (GMT 0)

trailguy said...
Now, after all of those treatments, I am on my way back to 1st round chemo real soon. Regrets? Only 1, and that would be not dumping the less-than-qualified urologist that missed it twice before I dumped his sorry ***** and went to a real doctor who found it - 12 out of 12 cores....2 years later...
There is no sense in putting yourself through the shredder for water under the bridge you can do nothing about.


Like Trailguy, my greatest regret was trusting the wrong doctor. My regular urologist whom I had seen for years kept telling me my prostate was normal. He never even mentioned the word cancer. When he retired his partner did an MRI that found my PCa, which by then had advanced to very high risk. He used a broad cut removing most of the nerves. My wife and I had emphasized that getting rid of the cancer was more important than tissue preservation.

The surgery left me with negative margins and negative nodes, but also an incontinent eunuch. That doesn't bother me as much as resentment over the lost years when this could have been treated much easier with less damage. My doctors all did excellent work but every step of the way has left me with some troubling side effects. I wish I could stop obsessing over everything that went wrong. That's probably doing more damage emotionally than the actual physical fallout.

So would I do anything differently? I would have found another doctor much sooner,

Trailguy, good luck with your chemo. That's a tough break after six years and I hope that I never find myself in that situation. Sounds like your head is on straight and that's half the battle.
Posted 12/26/2018 3:54 PM (GMT 0)
Yes, we have had a number of similar discussions during the past few years, in numerous threads, about the regret issue.

And in a few of them, the question of wondering if things might have been better/worse if a different treatment path had been chosen came up.

In a thread from January 2014, named appropriately "Any Regrets?", I submitted the following thought on the matter of changing a past treatment decision, if it were possible to do such a thing

This discussion reminds me of a recurrent theme in fantasy literature, namely that of getting the chance to go back in time and change things, thinking that altering the past will somehow make the future better. In a typical plot of this kind the hero regrets something he did, or didn’t do, in the past. He is convinced that if he can just go back in time, redo that thing, and thus alter the future, that things will turn out oh so much better than they did the first time. So in the story, through some supernatural means, he gets his chance, goes back in time to that situation, makes different choices and alters events, and thus creates a new future. And as he is returning to the present he is congratulating himself on how much better the present will be now, thanks to the changes in the past that he has made. But when he gets back to the present what he finds is that things are different now but not necessarily better. In fact, they may actually have become worse because of what he has done!

Moral of story: we don't have enough wisdom to play God in this way.

So, this is another reason why we shouldn't beat ourselves up too much about decisions we made in the past along the PCa road. Because if we really could go back and change things from the way we did them the first time, maybe select a different treatment plan, there are no guarantees about what the outcome of that would have been, and we might just have wound up like in the story.
Posted 12/26/2018 3:56 PM (GMT 0)
"Prostate cancer treatment regret" is a Google search phrase, that will return studies showing that about 15 percent of men will regret their choice. This is about even between RP and RT. The side effects are the usual ones, and drive the dissatisfactions.

https://www.health.harvard.edu/blog/treatment-regret-prostate-cancer-2017102012535

It appears that failure to consult more specialists and obtain more information and perspectives is a major part of this regret. As Curtis Sliwa has said in interviews bemoaning his treatment with the best-known robotic surgeon "He didn't tell me that I would be like this".

Taking the time and making up your own mind is the best guarantee of not having regret. Easy for me to say, as I've been researching possible treatments for a decade, and still always have some doubts.
Posted 12/26/2018 5:40 PM (GMT 0)
I think it's fair to say that he majority of regrets are on the surgery side, and for this I blame the doctors. the prostate snatchers. the contact man who tells you "with radiation you have no back-up".

another thing though. the "cured" tend to have more regrets or at least are more vocal about them.
Posted 12/26/2018 5:55 PM (GMT 0)
Robert,

Aside from letting you serve as a warning to men considering the same treatment, regret isn't actually good for much. Have you thought about an implant? I'm fairly happy with mine. Judging from what you told us you may be even older than I am. Let's see... fifteen years of AS plus three years since your surgery... and men are usually diagnosed at a certain age... hmm... Yep, your probably not a kid anymore. But from what I hear men who get implants later in life tend to have satisfaction rates with them that are comparable to younger guys, which is to say, they are generally happy with them.

If you google for "penile implants and age" you will find studies like this one:

Should being aged over 70 years hinder penile prosthesis implantation?
Posted 12/26/2018 6:53 PM (GMT 0)
As NY-Sooner said "...this is a small price to pay for being cancer free."

Once diagnosed, I did a cram course on PCa and made the decision for RALP. I also made the decision to go about 5 states away for treatment. Once these decisions were made, I banished regret and just looked forward.

When it comes down to it, if I want to play the regret game, I have WAY more things I should/could regret over my lifetime than this. In fact, this doesn't even rise to the occasion in comparison.

I am a fan of poet David Whyte. Here is what he says about "regret" in his book "Consolations"

…To admit regret is to understand we are fallible: that there are powers in the world beyond us: to admit regret is to lose control not only of a difficult past but of the very story we tell about our present; and yet strangely, to admit sincere and abiding regret is one of our greatest but unspoken contemporary sins.

The rarity of honest regret may be due to our contemporary emphasis on the youthful perspective; it may be that a true, useful regret is not a possibility or a province of youth; that it takes a hard-won maturity to experience the depths of the emotion in ways that do not overwhelm and debilitate us but put us into a proper, more generous relationship with the future. Except for brief senses of having missed a tide, having hurt another, having taken what is not ours, youth is not yet ready for the rich current of abiding regret that runs through and can even embolden a mature human life.

Sincere regret may in fact be a faculty for paying attention to the future, for sensing a new tide where we missed a previous one, for experiencing timelessness with a grandchild where we neglected a boy of our own. To regret fully is to appreciate how high the stakes are in even the average human life; fully experienced, regret turns our eyes, attentive and alert to a future possibly lived better than our past.
Posted 12/26/2018 8:12 PM (GMT 0)
Robert, I had a rising PSA two years after surgery, and ultimately chose to do Salvage radiation and ADT.
Whether that does the trick remains to be seen.

While i sometimes wonder if i had chosen SBRT over surgery as my frontline treatment, whether my PSA would have become detectable, i have zero regrets. Because as others have said, regrets does nothing but frustrate the person doing the "regretting". It wont change a thing .

Right now, i am pretty much sexless, due to the Lupron. Not that i cant get it up, i just dont care to. But while my ability to get erect is still there, its somewhat diminished, even before the Lupron. Still considering you are cancer free after all these years, I'd trade places with you any time. But thats me, we all have different priorities, and i feel for you. Try to let it go, and get joy out of being alive. Its not easy, when you feel as you do, but it can be done, maybe with some help if you are really in a bad way about it.
Good luck
Posted 12/26/2018 9:14 PM (GMT 0)
My chief regret is having PCa. Unfortunately we can't change the past, Robert. so I suggest you apply your energy to the future, rather than rehashing the past. I believe every decision we make is optimal, given the information we have at the time.

We have to play the hand dealt....all in.

I've been luckier than most re ED, and just gave my never used pump away. It was very impressive. Have you tried one? Ther is, I'm told lots of good data about them around. Good luck!
Posted 12/27/2018 12:40 AM (GMT 0)
Someone asked why do we have eyes in the front of our heads? Because we are looking forward, not backward. Regrets, I've had a few, but then again too few to mention....
Posted 12/27/2018 1:01 AM (GMT 0)
I was going to post that line yesterday GoBucks...but since I ultimately saw no reason to...its been rehashed so much here...thatrs the trouble when you stay active here...it all just keeps coming back...deja vu all over again..your placement of same was quite seemless tho...and Im sure you did indeed ..do it your way...so there is that...
Posted 12/27/2018 3:00 AM (GMT 0)
No regrets for having the surgery. The only regret is that my surgeon didn't recommended radiation soon after the surgery. As it is, My PSA became detectable after 9 years and radiation is probably in the near future.
Posted 12/27/2018 4:00 AM (GMT 0)
surely you cant blame your surgeon Ed C..He is no more a seer than you are...get real..defies all logic...it must be the times...scape goating wow...
Posted 12/27/2018 4:37 AM (GMT 0)

Ed C. (Old67) said...
No regrets for having the surgery. The only regret is that my surgeon didn't recommended radiation soon after the surgery. As it is, My PSA became detectable after 9 years and radiation is probably in the near future.


My numbers are worse than yours at 77 and I am not treating till over .1. And this is just my second year since RP. Your Doc got negative margins. Why are you blaming him?
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